Dr Mary Cosgrave

 Dying from Dementia  Dying with Dementia and something else  Levels of Palliative care: Palliative Care Approach, General Palliative Care interfacing with good Dementia Care, Specialist Palliative Care  Concerns of Staff, Family and MDT  Communication and Education

Diagnosis Advanced plans or what (s)he would want Admission to Care Depression, malaise Investigations First trip to Accident and Emergency Infections Feeding End of Life

 F, 70 years old, long term patient in the Community  Lived with wife, started respite in St Ita’s  Became long-stay, minimal BPSD but resistive: intolerant of procedures  Pale, Hb 9.0 g/dl  WHAT DO WE DO?

 T 68 years old, dementia and cancer  Extremely disturbed at home: would not go to bedroom to sleep and agitated  No support services: admitted St Ita’s involuntary and transferred to long-stay  Diagnosis of metastases, increasing agitation: ? Pain. Family unhappy with Ita’s  DO WE TRANSFER?

 G 59 years, dx dementia after a long haul in St James’s Memory Clinic  Unusual variant: insight preserved  Uneasy from Day 1 “Will I become an incontinent?”  Three admissions for depression  2006, admitted with agitation  STOPPED EATING: WHAT DID WE DO?

 D 66 years; lived with husband  Three of her siblings presented with AD  Husband hid her from services, very agitated by time of admission to St Ita’s  Never settled, ? In pain  Full investigations  HOW DID WE MANAGE?

 James: 68 year old man with advanced Parkinson’s disease with dementia, aphonia and diagnosed depression  Admitted BH, very ill, resuccitated but poor recovery.  Rehabilitation poor, needed enteral feeding  Pulled out tubes, tried to harm himself  WHAT DID WE DO?

 M, 65 year old married woman with end- stage AD on 1:4 week respite  Husband did not take advice and had PEG inserted by gastro team  Frequent problems with infections, insisted on full resuccitation for all illnesses  BECAME ACUTELY ILL. WHAT DID WE DO?

 All had advanced dementia  Palliative Care Approach: same outlined to families, explaining likely life-span and aim to ensure quality of remaining time  Medical Advice sought for confirmation of underlying illnesses  Palliative Care advice sought for all  Specialist Palliative Care Advice obtained for those with malignancy and intractable symptoms  Communication with Families: frequent and detailed was key strategy.

 Understanding of dementia, course, prognosis, duration.  Changing expectations, targets with disease change  Changing treatment target as appropriate  Balance of over and under investigation  Realism of health environment